# I am a number. And it’s a good thing.

My six year old boy was delighted to receive a Rubik’s cube from a family friend this Christmas, and naturally I quickly elbowed him aside after a few minutes of his failing to solve it, to give the 45 year old puzzle a try myself.

Days later, and I turned to the web. On YouTube there’s a clip of a contestant on Britain’s Got Talent completing three Rubik’s cubes in minutes. While blindfolded.

The feat takes your breath away, and had the judges standing and applauding in the way that they do. I’ll no sooner get this thing solved than sing like Adele, thought I.

But if you dare look again, YouTube and various websites will gladly offer up the not-so-secret fact that the Rubik’s cube is eminently solvable. In fact, it’s easy. As long as you know the algorithms.

If the white tiles are in one position, then turn the various levels this way and that until certain other pieces are in a particular position. When the white side is solved, move to the next level and start a new set of algorithms.

Follow the flowchart, make the right turns in the right places, and you’ll be able to solve it too.

And if you learn the steps and practice hard, you too will be able to do it quickly. And eventually, blindfolded.

None of which interests my son. But I’ve got the first three stages memorised, with another three algorithms to get down, I’m sure I’ll soon be a Rubik’s expert worthy of a Simon Cowell standing ovation.

I’m currently in the waiting room for my fifth cycle of chemotherapy to begin. I’ve been here for three hours so far – which is a standard wait, in my experience – and you might think having a Rubik’s cube here to pass the time would be ideal and that’s why I’m writing about it.

But actually, I’ve been reading a scientific paper about brain tumours and the new classification system that was imposed upon them by the World Health Organisation (WHO) last year. The paper includes a sample flow chart, in order to illustrate how the new classification works.

Instead of very broad brush categories or pigeon holes into which brain tumours have previously been squeezed, the WHO guidelines massively expand the number of pigeon holes – or rather, creates a network of flowcharts or algorithms, that help to more accurately pinpoint a diagnosis.

It’s this that has prompted my thoughts of the Rubik’s cube. Because if you get the algorithms wrong in the early stages of the cube, you’re much less likely to be able to solve it without going back to the beginning.

Arguably, the reclassification of brain tumours into detailed sub-categories has been one of the most important steps to occur in its field for sometime. Though not yet fully adopted worldwide, the WHO 2016 classification looks likely to transform, but also standardise, how brain tumours are treated in modern medicine.

Let me explain.

I am a number. It’s 9451/3.

In the new classification, it stands for the brain tumour that is ‘anaplastic oligodendroglioma, IDH-positive, 1P/19q co-deleted’. You can probably find your number too.

Previous to the WHO re-classification, I’d be called a ‘probable grade III oligodendroglioma’, and my genetic markers would generally be carried along with that rather broad definition on bits of paper.

The new guidelines are quite stricter. The classification specifically says that the definitions previously used were too broad, and didn’t take into account the very specific differences – mainly genetic – between tumour types.

In short, your anaplastic oligodendroglioma isn’t necessarily the same as my anaplastic oligodendroglioma because the genetics inside it may well be different.

Vitally, it means they should be treated differently – particularly in terms of their predicted response to different types of chemotherapy and radiotherapy.

So, my brain tumour’s histology – which before then new classification, as far as pigeon holing went, was ‘oligodendroglioma, probably grade II’. A histology is, basically, the cell’s shape indicating what type of cell the tumour has grown from, and its current behaviour. Grade II is very slow growing/multiplying, Grade III is faster and malignant, etc.

My biopsy also allowed the genetic signatures of my particular tumour to be defined. In my case:

1P/19Q deleted – This means that instead of two full strands of matching DNA in the brain tumour sticking to each other and matching exactly, one of the sides of the DNA has been replaced with shorter or mutated versions of the genes known as 1P and 19Q. The detail doesn’t matter.

The reality is that my having this gene combination (frequent in oligodendrogliomas) means my outlook for chemotherapy and radiotherapy is better than if I didn’t have them, or if I had a different form of chemo than I’m having: PCV.

IDH – My tumour also has a ‘mutation’ in the IDH gene creating the label ‘IDH1’ which is also good news for me – but again, only if I have PCV chemotherapy treatment, rather than another one.

If I had ‘IDH wildtype’ or lacked the 1P/19Q deletion in the tumour’s genes, the treatment pathway might be different.

Different specific genetically identified tumour types = different specific treatment. It seems obvious, but until last year it wasn’t official.

When I was diagnosed, this was far more of a finger in the air decision to be made by oncologists. From where I was sitting, it sometimes felt like no-one could tell me which treatment I’d need, when, and what the likelihood of success was.

The gradual pinning down of the tumour type – the gradual solving of the levels of the Rubix cube – began to give me the solidity and the predictability I craved.

I learned one day that there were more than 140 different brain tumour types and it felt like entering an abyss. It seems clearer now that there are probably far more than that, because each has or doesn’t have specific genetic characteristics within their main subtype. No wonder there’s now a complex numbering system for them. And it’ll continue to be refined as researchers find out more.

A reclassification isn’t going to make brain tumours go away. But it’s going to make it a lot easier for scientists and research labs to compare and complement each other’s work into the future, and to ensure that once our brain tumours do get classified, we can be sure we’re getting the proven best care we can.

We’re not twisting the cube to get all the green sides together, at the expense of the rest of the cube remaining mixed up. We’re getting the right pieces in the right places, in the right order, before we start we try to solve the cube step by step.

– The 1P/19Q image is taken from the National Comprehensive Cancer Network’s Patient Guide to Gliomas. The full document is well worth a download.

*

I’m devastated to report the sad loss of my friend and partner in brain tumour crime Marie, who was one of the first brain tumour pals I made after I was diagnosed.

She was kind enough to contribute to my Living Low Grade book and joined me on an online seminar about low grade brain tumours, which is still available.

We met once, and many more times over the phone and Skype, and followed each other’s journey closely. An MRI or doctor’s appointment rarely passed without a text or a call to see how it went. Unfortunately for Marie, her young family and for the rest of us, the last year or so of appointments tended to bring less and less good news.

Marie was funny, a little potty mouthed and had a warm Brummy accent that – reared as I also am from the Black Country – always made me feel at home. She wasn’t afraid to speak her mind, and we both supported each other when we felt we wanted to know more, or for our doctors to be more proactive.

While I knew the health of Marie was in decline – I first came to know her as a grade II astrocytoma patient, which later progressed into a grade III and ultimately malignant tumour – it still came as an enormous shock to learn from her husband James that she had died. It left my whole family in a heap of tears, as each of my kids had met her via Skype as we nattered on together about our treatments.

I miss her terribly, though I feel like I only benefitted from the smallest amount of wisdom and wit she had to offer. Her loss to her family must be incomprehensible. They have my greatest sympathy.

Marie’s life and death has inspired me to work harder to spread the word about brain tumours, and to help as much as I can those recently diagnosed to understand and respond to their conditions. I hope what I try to do would have made her proud.

1. Linda brazier says:

I knew Marie from birth a more fiesty courageous funny woman I have not ever met . She told me about you Gideon I wish you well in your battle linda b

2. Jess says:

Lovely piece Gid. The recent clarity, finetuning and categorisation sounds really cathartic, much more tangible and essentially more useful. Sorry for the loss of your friend. Keep pinning the tail on that donkey.

3. Jackie dunn says:

Hi Gideon ,
I am Marie’s mom , she often spoke about you , wishing you all the very best for the future
Regards jackie

4. Caroline Diehl says:

Great piece Gideon. Keep strong and keep writing – always an inspiration
Love,
Caroline

5. Richard Stevens says:

Hi Gideon,

I am so sorry for your loss.

Thanks mate. I missed all of this reclassification stuff. It is as well that we have you keeping us up-to-date. I am a number! I am 9401/3.

Cheers,
Richard

6. Ali says:

Great writing as usual Gid, but sorry to hear about your friend. I’m sure she would have been proud of you for what you are doing – we are. xx

7. jesse heckstall-smith says:

I have no words but I do have a new number thankyou all.